The National Organization for Rare Disorders is an American non-profit organization aiming to provide support for individuals with rare diseases by advocating and funding research, education, and networking among service providers.

Health Care

National Organization for Rare Disorders

National Organization for Rare Disorders' headquarters in Danbury, CT, United States

Pamela Gavin

Neeta Kotecha

Kelly Esperias

Edward Neilan

Alexa Moore

Cheryl Herbert

Norine Schwarzchild

Shafali Spurling Jeste

Phillip L. Pearl

Kay Holcombe

Jim Palma

Susan A. Berry

Mark Skinner

Leon Eidelman

Dennis Jackman

Mike Porath

Tom Kelly

Lorna Weir

Sheldon Schuster

Steven Mah

Alan M. Miller

The Human Resources and Compliance team at the National Organization for Rare Disorders is responsible for managing the organization's talent acquisition, employee relations, and organizational policy adherence. This team ensures that the staff is supported and aligned with the organization's mission while also overseeing compliance with relevant regulations and best practices to promote a positive work environment and ethical governance.

Human Resources and Compliance

The Leadership Team at the National Organization for Rare Disorders guides the strategic direction of the organization, ensuring effective advocacy, research funding, and educational initiatives for individuals with rare diseases. Comprising key executives from development, medical and scientific expertise, policy, human resources, and information technology, this team collaborates to optimize resources, influence policy changes, and enhance community networking while fostering a supportive environment for stakeholders.

Leadership Team

This department focuses on building relationships with the community, managing donor engagement, and coordinating volunteer efforts.

Community Engagement

The Information Technology and Support team at the National Organization for Rare Disorders is responsible for managing and optimizing the organization’s technological infrastructure to facilitate communication and data management. This team collaborates with various departments to ensure efficient support services, enhance user experience, and implement innovative solutions to advance the organization's mission of supporting individuals with rare diseases.

Information Technology and Support

This department focuses on fostering growth through development initiatives and educational programming.

Development and Education

This department manages research initiatives and oversees program implementation to enhance clinical outcomes.

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National Organization for Rare Disorders

Org chart

Board & advisors

Teams

Human Resources and Compliance

Leadership Team

Community Engagement

Information Technology and Support

Development and Education

Research Operations

Offices

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National Organization for Rare Disorders

Org chart

Board & advisors

Teams

Human Resources and Compliance

Leadership Team

Community Engagement

Information Technology and Support

Development and Education

Research Operations

Offices

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